Direct vs. Indirect Bilirubin and Dr. credibility

I have a question for the great people of this board. I have been seeing a couple of different doctors and I am not sure about if I can trust what the latest Dr. is telling me because research I have done says different than what he is saying. I had a blood test come back with a direct bilirubin high (only about .03 out of range at .23 but still high), and also had ultrasound done on abdomen. Two Dr.'s have told me that the ultrasound looks fine, but one of the Dr.'s is telling me that I have Gilbert's syndrome.

I thought when you have Gilbert's syndrome it is the indirect bilirubin that is elevated - not the direct bilirubin. I tried to ask this to the Dr. but he said something along the lines of "the direct bili measurement is not all that reliable and that is what we used to think but new evidence says otherwise". I was wondering if anyone had any insight into this question. Also, only with an elevated direct bilirubin and a 'pass' ultrasound - can I pretty much (with high probability) write off the possibility of permanent liver damage? Should the elevated bilirubin be a cause for further investigation, or can I just 'wait it out' (while not drinking of course :) ). Any comments are appreciated. Thank you.

23 Replies

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  • Have you read the British Liver Trust website page on Gilbert's Syndrome because it might answer your question better than any of us laymen/women. We can only really comment with any sort of certainty on things we've experienced, seen or researched ourselves.

    From what you have been saying you may well have Gilbert's Syndrome - the BLT page details the tests which diagnose this condition as well as symptoms, treatments and how to look after yourself with the condition. It is usually a fairly benign condition and providing you look after yourself it should not prevent you living life as normal.

    I have a friend who has recently retired from the Police and had a diagnosis of GS and it never affected him in any way, shape or form.

    The GS page is at : - britishlivertrust.org.uk/li...

    I hope it helps to alleviate your fears, with next to normal blood results and a clear ultrasound and different doctors confirming no long term damage I would be happy with that and go forth and live your life but of course continuing to look after your liver.

    All the best, Katie x

  • Yes so this page says that unconjugated hyperbilirubinemia (or indirect bilirubin) is raised... should I call my doctor and ask if he knows what he is talking about...

    If direct is raised is it a cause for concern that needs to be investigated further?

  • Assume you're in the USA.

    Here are the NICE guidelines from the UK

    cks.nice.org.uk/gilberts-sy...

    What your doctor is saying may be correct in that direct bilirubin measurement isn't accurate - and 0.23 v 0.2 isn't very high in a dynamic system, plus you would need several instances - but I can't find the "new evidence" that he's referring to. Doesn't mean it's not there.

    If you've been drinking then you may have fatty liver or even some fibrosis but the ultrasound would usually pick up cirrhosis or later stages of fibrosis. So you may have liver "damage" but probably not enough to show in blood tests yet - i.e. the liver is coping and has sufficient capacity.

    But....

    Given that the "cure" for alcoholic liver damage is abstention and allowing the liver to repair or regenerate it's really in your own hands anyway. There is no cure for fibrosis. You have to stop the cause of liver inflammation (and fat infiltration) before you get past the earliest stages of cirrhosis and then hope the liver will repair or regenerate itself.

    So stop drinking, watch your diet and get them to check after a few months unless something else happens.

    Cheers.

  • PS - Can't see what you're going to get out of challenging your doc at this stage - just keep an eye on it, retest in a few months and if direct bit still high then raise the issue again re: it not being Gilbert's - in the worst case he'll explain his reasoning.

  • Misterx -

    Do you know is there different degrees of ultrasound? I know that the ultrasound that was ordered for me was an ultrasound of the abdomen (which includes the liver). Are there other ultrasounds (like one that specifically looks at the liver in more depth) - that would unveil items the general abomen ultrasound wouldnt? Just a general question. Just want to know how reliable this clear ultrasound really is - I was thinking about going for fibroscan just to make triple sure.Thanks!

    Justin

  • Hi,

    No there is just ultrasound. If it included the liver they'll have scanned it in the same way and if they're scanning the liver they're specifically looking for fibrosis, nodules, cysts, tumours etc.

    If the ultrasound is clear then that's a good indication that there is little or no fibrosis. The ultrasound is actually quite good at finding significant fibrosis - but as with all liver tests it is a mistake to take any single test in isolation and your doctor would not do that, so he/she would add the ultrasound to the remainder of the evidence to draw a conclusion.

    Best regards.

  • Thank you for the quick response. I have also seen that ultrasound could be useful for finding fatty liver. Do you know about how reliable it is in this context? I assume that the ultrasound is quite reliable since it has been the main tool (other than biopsy and bloods) to screen the liver. Also, if it was fatty liver - this often causes the liver to be enlarged correct? So this could be another physical finding on the ultrasound.

    I am still stuck here without a finding on why I had elevated direct bilirubin - and a wandering mind is not a good thing! I found a local place that does fibroscan and I figured it could be one more thing to ease my speculation. If that comes back clear - then I am going to assume that something wacky just happened and move forward.

  • Yes an ultrasound is usually quite good at spotting fat infiltration - again past the earliest stages - but that will reverse anyway once you stop the alcohol - unless your lifestyle and diet are poor which only you will know.

    It would take quite a lot of fat infiltration to cause liver enlargement - did your doctor mention either fatty liver or enlargement?

    I must admit I'm not entirely sure what your thought process is here. It's clear that the direct bilirubin number has spooked you. It's also clear that you were drinking heavily. Given that you stopped the drinking wouldn't it make more sense to wait for things to settle down a bit after the drinking and then get another blood test?

    Otherwise you'll be in the position of going to the trouble of getting a fibroscan to investigate a bilirubin blip which may no longer exist or be in the process of resolving naturally... and which you haven't confirmed with even a second blood test.

    Cheers.

  • You sure could say it spooked me more like scared the bejeezus out of me. The reason I am still concerned is because what the doc said about Gilbert's did not make any sense and there is much evidence online of people making testimonies about how ultrasound did not catch their issues.

    You are right with the history as I know that I have overdone it with drinking int he past. The nauseau / etc. that I posted about earlier has gone but now I am having some other things going on that are suggestive. My hands / feet have started to be continually cold (even now my feet are in boots at work and they are still cold with an outside temp of 70 degrees!). Also, I get the tingling / numbness. I keep getting splinter hemorrhages on different nails without any trauma. Also, I have noticed that I have vertical ridging on every single one of my fingernails and I am only 29 years old (everything says that this is usually due to aging).

    With the fibroscan, I would just like to have something a little more definitive to back up the ultrasound (it sounds like this method is more relied upon). If I got a low score on fibroscan then I could definitely move forward a more healthy, and conscious person. For now though, I cannot get rid of this seed of doubt that has been planted.

  • Fair enough - but do bear in mind that there is a world of difference between evidence and anecdotes.

    Best of luck.

  • PS - Obviously like the vast majority of people who had an ultrasound that indicated fibrosis - actually lots of ultrasounds - I haven't mentioned it online before but I shall now just to redress the balance a little bit. ;)

  • PPS - What do you plan to do if a fibroscan indicates early fibrosis - ie at a level an ultrasound would not catch?

  • At least then I will know that I have something that is real to actually worry about.

    I don't want to change my eating habits and lifestyle 180 degrees if there is not a reason to do so. Right now, I have a high bilirubin and a clear ultrasound but still the doubt that I could have a problem.

    If I back that with a fibroscan then I will be very confident that I do not have an issue and live life a lot more cautiously than before but not completely deprive myself of good food / sugars/ etc. For sure, the heavy drinking is in my past. I tried to call the clinic with the machine today but they say that I need a referral - so I am going to call my gastro and see if he can do the deed.

    The liver is a scary thing with how people are treating themselves nowaday. I went to a wedding this past weekend and realized more than ever how deeply engrained alcohol is in our society. Basically the whole procession after the ceremony was about drinking. Even before the wedding I saw the groomsmen and groom drinking. After the wedding, the groomsmen couldnt even wait until after pictures to start drinking beers.

  • If I recall the rest of your blood results indicated good liver function. You shouldn't be ignoring those.

    Anyway best of luck. Keep us posted.

  • I will thank you for your experience and insight.

  • NICE guidelines for hyperbilirubinemia here.

    cks.nice.org.uk/gilberts-sy...

    If you only have 1 instance of raised bilirubin I don;t think you should be too concerned - your body is a dynamic system - lots is happening and isolated results can cause you to waste a lot of time worrying for no good reason.

  • Yes but what is worrying me is that the Dr. Did not tell me that I had to make any lifestyle changes. No diet, no abstention from alcohol, nothing! Now I am subconscious everytime i eat something a little fattier / sugary because I am concerned i could be doing more damage to something the doc did not uncover. I mean what other than biopsy can give conclusive results.

  • Hi,

    Can't write much as I'm wandering sround a museum. I understand your concern but I don't think anything you've said so far justifies that level of fear on your part.

    I have cirrhosis and I don't panic about every morsel. You have normal blood results and a minimally raised bilirubin and a clear ultrasound. Abstain fron alcohol or drink responsibly and eat well. Your liver is designed to repair irself and you know the difference between healthy and unhealthy living - so do it.

  • Sorry answer above written on the phone and on the move. (Corrected many typos)

  • AS already explained the ultrasound has its clinical usefulness, but it wont see early damage alot of the time. Its not just the Liver that can cause bili to jump around, the Pancreas can to if it is irritated, also so can the stomach and intestines, anything that slows bile secretion down really.

    I think your thoughts on Gilberts are correct, but you doctor is not concerned and thats a good sign of course.

  • Yes but what is worrying me is that the Dr. Did not tell me that I had to make any lifestyle changes. No diet, no abstention from alcohol, nothing! Now I am subconscious everytime i eat something a little fattier / sugary because I am concerned i could be doing more damage to something the doc did not uncover. I mean what other than biopsy can give conclusive results.

  • Oh my goodness... You do not want to go through a biopsy based solely on one elevated bilirubin result! Even if a doctor would refer for you for one, which they won't. My husband, who has a 100% healthy liver (it's me that doesn't) had some blood tests done a while ago as part of a general MOT. They came back with a slightly elevated bilirubin. Reason? He was slightly dehydrated when he had the bloods drawn.

  • bolly is right a biopsy is no picnic, its expensive and invasive and you can have some complications from it.

    the best test in the UK is Fibroscan to check for Liver scarring, but of course you "could" have an issue but just no scarring at the time of the scan.

    If you feel good then just follow up with some bloods every 3 months or so until you feel confident your Liver isnt about to fail.

    why were you having these tests in the first place?

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